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Doctor in the house: How I’m changing my chronic pain management

Have you ever seen Doctor in the House? It’s a UK BBC 1 programme where a doctor moves in with a family to try and solve their chronic health conditions. The programme follows Dr Rangan Chatterjee, who believes it’s impossible for a GP to effectively treat complex health conditions in five minute consultations (no shit Sherlock), as he spends a week with the patient to understand their lifestyle and try to ‘solve the mystery’.

I watched it for the first time last week when the focus was on a woman, Gemma, who suffers from cluster headaches – or ‘suicide headaches’ as they’re often known. She was having up to 16 attacks a day which were absolutely agonising; they only lasted ten minutes or so but for those ten minutes she was screaming in pain and it was horrifying to watch.

I cried throughout the entire episode. I don’t get cluster headaches but for the last two years I’ve been having a similar pain every four to six weeks which lasts for about 24 hours. The headaches are far worse than my usual migraines (which I’ve had since the age of nine) and this – on top of my fibromyalgia – has made me realise that something really needs to change.

The journey to diagnosing and then managing chronic pain is never an easy one. Since I became ill in 2009 I’ve seen five GPs, two physiotherapists, one rheumatologist, one pain specialist and one acupuncturist. I’ve also tried four types of alternative therapy and three sets of cognitive behavioural therapy, had one MRI scan and one set of blood tests. During that time, no one and nothing has helped. The MRI scan and blood tests took place within the first month of my symptoms occurring but, since the label of ‘fibromyalgia’, no one has done any further investigation on any of the symptoms I’ve presented with – new or otherwise.

I know this is a very familiar story for chronic pain patients, and if you’ve been suffering from fibromyalgia or chronic fatigue for decades then I know your numbers are far higher than mine.

During the episode of Doctor in the House, these were the five health/lifestyle areas that Dr Chatterjee focused on in an attempt to reduce the cluster headaches. Tests for neurological conditions came back negative and medication wasn’t working, so he changed Gemma’s diet, referred her to a chiropractor, provided supplements and introduced relaxation and self-care activities. By the end of the three month review period, she had gone from 16 attacks per day to 5 per week. So, after wiping my tears (tears of empathy, jealousy, exhaustion, and frustration) I decided it was probably about time I started from the beginning and re-analysed my chronic pain.

When I was diagnosed with fibromyalgia eight years ago, I was convinced there was something else wrong, something they were missing, but as time went by I made my peace with it and accepted that the diagnosis was most likely correct. The challenge then wasn’t the diagnosis, but the misunderstanding of fibromyalgia in society and the stigma attached to invisible illnesses. Last year there was some progress when research was published that suggested the pain was down to abnormal sensory activity in the way our brains process pain; it seemed like a bit of a breakthrough and the Arthritis UK Pain Centre is now funding a study to develop a blood test to diagnose fibromyalgia.

So now I feel like maybe it’s time to take some advice from Dr Chatterjee. My potential neurological conditions were explored in 2009 so I’m assuming I can rule that out; that leaves me with four other areas to investigate. I’ve addressed them all individually at various times (swimming was actually pretty good, the gluten free diet was not because – pizza) but a lot of people say the best way to manage chronic pain is with a multi-treatment approach and that’s something I haven’t looked in to. In fact, I’ve always been adamant it’s not the right approach; if I change ten things at once, how will I know what’s helping? Plus, doing lots of things in one go costs money, takes energy, and requires focus. The options are endless; which classes do I join? which alternative therapist should I see? which supplements should I take? and how am I paying for all of this?

You know what I want? I want a GP who can give me a list, give me some recommendations, and tell me where to start. Sadly, that’s not a thing, so apparently I’ve now reached a new phase and I’m following the advice of a TV doctor. Is this what they call a new low? Perhaps. But let’s go with it…

Tonight I’ve made a list of all the things I need to do, appointments I need to make, classes I need to change, food I need to eat… the list goes on. The multiple treatment approach is happening.

As always, I’ll keep you posted. I’m going to do a series on each of the four areas so that you can follow my journey and see what’s working. In the mean time, help me out… What’s made the biggest difference to your pain management?

26Comments

Yin yoga, which targets myofascial tissues, has been very helpful for me. There are always props and you can use as many props as you want so even on a bad pain day, it leaves me feeling even just a little better, even just for a day or two – doesn’t seem like much but it’s worth it!

I grateful for you blog. Everything you said I 100% get. I’m in the middle of restructuring treatment myself. So. Much. Work. But somehow knowing I’m not alone makes it a tiny bit better. And I’ll take all the positive influence I can get. Thanks for sharing.

I watched that too and it’s fascinating to see a multi-pronged approach and how it can work. FM is a curse but changing little things can help but the prob is knowing what little things to change. It’s so personal for everyone as unfort one size doesn’t fit all 😱
I swear by swimming, rest, magnesium and keeping an eye on my depression/anxiety, it’s like another full time job but s’gotta be done. And in the days I can’t face the world cos of pain etc I don’t beat myself up and remember that tmw’s another day to quote the fabulous Scarlett 😜

Hi! When I was married ’64-’83, I used to have migraines frequently- had to do the dark room, no noise, vomited from pain, had to shush the kids and all that. Only thing that worked: aspirin with codeine; dropped me in my tracks for awhile but did work.. It was ‘cured’ when I got a divorce! Stress hormones maybe. I’ve read that it’s related to Progesterone and birth control pills supposedly cure it. In 1981 I walked out, in 83 the divorce was final and I have only had one migraine since, about 15-20 years ago. Don’t know the cause. Was in 2nd marriage ’99-’13 when widowed, so maybe. He was around then so who knows.

I’m actually allergic to wheat, tested out in ’72. It gives me sniffles & congestion. Pizza is great with oat, quinoa, cornmeal, anything but wheat or rye flour crust. With ground beef or grilled chicken, Canadian bacon, spinach, goat cheese, onions & garlic, You don’t even know what is under there! Delish!

More later on CF & Fibro. Have dealt with both, plus lymphedema (br. ca) Hope some of this helps someone!
Barb

Where it was this program for you, it was a book called suffered long enough that was the catalyst for me and made me look at my own health differently. It feels like a minefield but I think it’s empowering to take control of our own health & advocate for our own needs. I’ve uncovered and learned so much I never would have had I accepted Fibromyalgia and stopped there.

I’m really looking forward with interest to research that will come out in the autumn about Fibromyalgia from Dr Jared Younger at UAB. They are looking at Fibromyalgia from the point of view of immune dysfunction, which makes so much sense. I think the blood test that’s available in the US is based on immune factors.

I hope it creates a lot of change that will benefit Fibromyalgia patients. As currently, what stands is not good enough

I didn’t know it was due in the autumn so thank you for that. You were in my thoughts as I wrote this, because I know you’ve done a lot on taking control of your pain management – and you’re far better at it than I am! It’s good to feel inspired though and I hope to be more in control in six months time.

I don’t know if I would say that! Just muddling my way along most of the time, hoping something sticks XD Every now and again it all feels too overwhelming. You’ve got this though. The fact you’re looking to make changes says a lot.

Twice weekly Aqua Zoomba was helpful to me. I would imagine it would be the same for any water-based exercise. It helps to loosen those muscles without the impact which can hurt. It also builds core strength which helps as well. The bit of aerobic exercise also helps to release those endorphins which fight the depression. I didn’t sign up for this semester’s class due to some personal reasons and am really feeling the difference. My classes are through the local school’s evening program and is pretty reasonably priced.

I am featured in episode 4 of Doctor in the House. I had fibromyalgia and other issues. I was advised and it is working that you need to take a multi faceted approach which is incredibly hard when living with CFS/ fibro etc. If I can help in any way I am on Facebook.
Best wishes
Nicola

Hi Nicola, Just saw your show on BBC last night and was very interested. I have Fibro and are getting nowhere with the GP’s. Have tried to look into the pain management method mentioned but not sure if it is even run in NZ. It was great to see how you improved with the muliti facet approach suggested by the Doc. Wendy.

Hi Wendy, I have set up a positive fb support group because people were interested in Rangan’s approach. If you are interested it’s called To be a better ME
9 months on and I’m doing really well, stay hopeful, things can get better,
Kind Regards
Nicola

Hi Lesley,
It took time for me to fully understand everything and I’ve been working hard since but yes it has really helped. I no longer have fibromyalgia and haven’t for 9 months and over time my fatigue has significantly reduced. Xx

[…] flare is pretty much consistent, the way I cope with it most certainly is not. Back in May I wrote this post about changing my approach to chronic pain management in the hope it might have a long term impact […]